title: Understanding discrepancy in perceptions of values: individuals with mild to moderate dementia and their family caregivers.
abstract: OBJECTIVE
  We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers.
  
  
  METHODS
  We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to care (autonomy, burden, control, family, and safety). We used multilevel modeling to investigate if there are dyadic level discrepancies in beliefs and what factors are associated with such discrepancies.
  
  
  RESULTS
  Caregivers consistently underestimated the IWD's values for all five values. Discrepancies were associated primarily with caregivers' beliefs about the IWD's involvement in decision making. Race was also associated with the discrepancies for control and safety, whereas cognitive functioning of the IWD was associated with the discrepancy for burden.
  
  
  CONCLUSIONS
  Many caregivers do not have an accurate depiction of the IWD's values, yet, caregivers will become the surrogate decision makers for IWDs as dementia progresses. These findings indicate the need for assessments of values and preferences in care and to develop programs that assess values, consider the caregiver's beliefs about care, and improve communication within the dyad in the early stages of dementia.
authors.affiliation: Department of Human Development and Family Studies, Pennsylvania State University, University Park, PA 16802, USA. amr383@psu.edu
authors.forename: Allison M
authors.initials: AM
authors.lastname: Reamy
authors.forename: Kyungmin
authors.initials: K
authors.lastname: Kim
authors.forename: Steven H
authors.initials: SH
authors.lastname: Zarit
authors.forename: Carol J
authors.initials: CJ
authors.lastname: Whitlatch
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D032882:Comprehension; D003657:Decision Making; D003704:Dementia / Q000451:nursing* / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D010465:Perception; D012945:Social Values; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires